Isabella has a doctor's appointment tomorrow. I'll be learning how to change her button / feeding tube. I'm a bit nervous about the entire process so it will be nice to have medical staff around the first time that I do it. As you can see, thanks to health.allrefer.com for the amazing diagram, her stomach is sewn to her abdominal wall. There's a balloon that is filled with sterile water inside of her stomach that keeps the button in place. I'll be emptying the ballon, removing the the G-Tube and inserting a new one. It sounds fairly simple but so did changing the ostomy bag... ehem.
At this appointment tomorrow, I'd like them to address this vomiting issue and give me some pointer's on desensitizing her gag reflex. I'm not sure how much of it is triggered by a full tummy, textural issue or behavioral issues. Surely this isn't the first oral aversion that they're dealing with, can't they just tell me how to fix it and hand me a magic wand on my way out?...Am I right!? In all seriousness, life without a colon has really been tuff on her. Bella needs more nutrition and hydration, there has GOT to be something more that I can do to get her healthy. Feeling helpless is torture when it comes to my kids. This is what I'm here for, it is my responsibility to nurture my kids...not to watch them starve to death with a feeding tube in place.
Primary Children's Hospital has an amazing team of Nutritionists and Gastroenterologists. I'm really hoping for some encouraging feedback after they examine her and evaluate her progress. I'm excited for tomorrow and hopefully I can report good news to you! Wish me luck with the button change!